Report Title:

Trust Fund; Medically Fragile Children; Special Needs Children

Description:

Creates the medically fragile children's trust fund that helps pay for the medically fragile child's medical and caregiver's expenses. (SD1)

THE SENATE

S.B. NO.

2621

TWENTY-SECOND LEGISLATURE, 2004

S.D. 1

STATE OF HAWAII

 


 

A BILL FOR AN ACT

 

relating to medically fragile children'S trust fund.

 

BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF HAWAII:

SECTION 1. Recent federal and state legislation has increased awareness of the rights of all people with disabilities. The passage of the Americans with Disabilities legislation, the United States Department of Education's Individuals with Disabilities Education Act, and state and federal health care reform initiatives have created a growing sensitivity to quality-of-life issues, empowerment, and the right to self-determination among individuals at all levels of disability. These trends place a larger responsibility on government to provide a means for meeting the unique needs of children with disabilities.

A medically fragile child usually has a severe disability that is potentially life threatening and who has reached a state of well being which is maintained only with continuing complex intervention that is medical/nursing and/or technologic in nature.

The legislature finds that the health care needs of medically fragile children has progressively become more expensive throughout the years and may not be available to all children due to a family's financial situation. The legislature believes that this is unacceptable. All children regardless of financial situation should be afforded the proper health care services so that every child may reach their maximum rehabilitation potential and they and their families can lead happier, healthier lives.

The purpose of this Act is to create a medically fragile children's trust fund. Moneys collected into the trust fund shall be used to pay for the medically fragile child's expenses as well as their caregiver's expenses to ensure proper health care.

SECTION 2. Chapter 321, Hawaii Revised Statutes, is amended by adding two new sections to be appropriately designated and to read as follows:

"§321-   Medically fragile children's trust fund. (a) There is established in the state treasury the medically fragile children's trust fund, which shall be administered by a community foundation. All funds contributed to the trust fund, appropriated by the legislature, received from grants, donations, or the proceeds from contributions, and the interest or return on investments earned from moneys in the trust fund shall be deposited into the trust fund and shall be used to fulfill the purposes of this section, including respite care, vacation for caregivers, medical equipment, and supplies not covered by medical insurance.

(b) Moneys in the medically fragile children's trust fund shall be invested by the community agency that administers the trust fund, and all investment earnings shall be deposited to the credit of the trust fund.

(c) Upon termination of the medically fragile children's trust fund, all remaining unexpended and unencumbered funds shall revert to the credit of the general fund.

§321-   Medically fragile children's trust fund advisory committee. (a) There is established a medically fragile children's trust fund advisory committee to be placed with the DOH for administrative purposes. The advisory committee shall perform the following functions:

(1) Make recommendations on disbursement of the trust fund;

(2) Establish criteria for a one-time per family extraordinary expense allowance, not to exceed $5,000, to assist in such expenses as ramp installation, bathroom modification, or vehicle conversion;

(3) Determine the types of eligible costs and limit expenditures to those not covered under health care insurance;

(4) Determine whether it is financially possible to allow for expenditures for adult children who remain medically fragile; and

(5) Establish criteria for expenditures for caregiver expenses.

(b) The advisory board shall consist of five members, including one member each from the department of health, department of human services, and attorney general, and two members of the public representing families with medically fragile children, as designated by the director. The board shall elect its own chair."

SECTION 3. New statutory material is underscored.

SECTION 4. This Act shall take effect upon its approval.